When Your Appearance Matters to Your Child

My typical outfit for the last 11 years has been jeans, a t-shirt and something to cover my head due to alopecia, typically a bandanna of sorts or something like what cancer patients wear when they do chemo. I shave my head so that the significant loss of hair due to alopecia doesn’t break me every time I look in the mirror.

When I drop off my kids and pick them up I am in my usual attire, that’s what I am comfortable in, when you work in IT and they let you wear it every day you get used to it. Depending on how I am feeling I may wear a “nicer” top when going to events at the school (parent/teacher conference, back to school night).

I volunteered at my second graders school for one hour this week. It consisted of sitting on a stool next to a filing system where the kids school work goes and then putting those papers in the corresponding folders. Easy enough for my wonky brain and broken body, though I must admit that doing that for an hour, as simple of a task it may be, actually wore me out. I felt more foggy and fatigued than usual but my kid was so excited I was there.

That being said, and knowing that I already draw attention with a service dog, I put on a more business casual top for that day and my son picked out what was going on my head. He did not approve of the plain black scarf I was going to wear tightly around my scalp with a knot that made it look like a bun at the back.

He is keenly aware of appearance at the ripe age of 7. Most recently he likes to check himself out in a full length mirror attached to a cabinet in the living room where we keep the snow gear. He wears light weight jackets around his waist like an accessory, and makes careful selections about his shirt each day. I expect this from my 13 year-old, I wasn’t prepared for it from my 7 year old.

The oldest made a comment the morning I went to volunteer asking ┬áme where I was going because I was more dressed up than usual. While I would like to think people should just accept us how we are, fashion choices and all, I know that is not the world we live in. It saddens me to think that what I may be wearing will have an impact on how classmates treat my son, it doesn’t make sense and yet that is the world we apparently live in.

Until the world changes, I will continue to let my kids advise me on attire when I am attending something with them or at their school because I love them and don’t want their life to be any more complicated than it is having a mom with MS, Meneire’s disease and a service dog.

Motherhood, Multiple Sclerosis and Isolation

Isolation is an unpleasant feeling and I think perhaps a bit shameful. At least I feel shamed when I’m feeling isolated.

I have friends, I have a solid group of mom friends in addition to non-mom friends. So why do I feel isolated when my husband works late almost every night during his first week at his new job? In part he’s late because he’s getting to know co-workers so he has to stay to finish work. I’m not angry at him for it, I’m actually happy for him. Finding people to connect with in a new environment is hard, it gets harder with age.

Perhaps I’m a bit frustrated at handling everything at home and dealing with sibling fights, homework, dinners, Cub scouts and all the other shit that I normally have a partner for so I’m not out numbered. So I feel bad and a bit ashamed of myself for getting upset that I’m here, parenting alone with no energy.

More likely it’s because this week as been rougher than I’d hoped. Taking a week off of things to recoup from being in a social setting for 10 hours hasn’t been as relaxing and restorative as I planned.

I feel terrible, my body aches, I’ve had a headache on the verge of migraine for 5 days now. I had a cookie that I feel bad about eating because I was doing really good with keto. Arguments about bed times and video games are never ending.

No one wants to hear how super shitty I feel this week so I sit with it, hold it in like a secret. I don’t want pity, nor do I want someone to say the things they think they should because I answer honestly when they ask how I am.

So I isolate myself more so I’m not a burden to others. I don’t have to be another thing for someone else to worry about. I’ve got this, I may not be doing well but eventually it will balance out, it usually does.

Explaining Multiple Sclerosis to Children

If you’ve been reading my blog for a bit then you know I have two sons, 13 and 7. I was officially diagnosed with MS when when they were 8 and 2 but I had been experiencing issues for so much longer.

How do you go about talking to your kids about MS, the future and changes that may happen? There’s no protocol to follow about informing your children about this disease. You want to prepare them but not scare them. You need them to know certain things (depending on what your own MS looks like) but also not make it look bleak.

For me, I have always told my kids up front what is what, I realized later that slowly easing into it would have probably been better. I like to have all of the information and possible outcomes and I assume everyone else does too. I didn’t think that through though because at the time I was in a whirlwind of information, my new reality and trying to figure out what course I was going to take. I was in crisis management mode.

My oldest was worried, he is less so now thankfully, and as my youngest grew I bought books on MS written for kids. It helped, there were words and pictures in front of them discussing the science of it and what it looks like for different people.

I am NOT being paid for this information, I just want other people with MS to know what I have found helpful.

  1. Sometimes, M.S. is yucky by Kimberly Harrold, this book is short and goes over the basics with illustrations that children can understand. In the back of the book there is a section for adults to read through prior to reading it to a child so they can know kind of what to expect from kids and questions and the best way to discuss it. (This book could be read to younger children, maybe even 3 years and kids you might feel will be overwhelmed with information. The illustrations in this book is a mom and child, medical people and does have a mom in a wheelchair)
  2. My Mommy Has Multiple Sclerosis (Gail’s Story) by Rebecca Clary, this book’s illustrations are animals, the mom is a giraffe and an elephant doctor. This book also discusses symptoms that may come and go and what it looks like. The author is a mom who has M.S. and in the back there is a kid friendly glossary.
  3. The Electrifying Story of Multiple Sclerosis by Vanita Oelschlager, this book is for older kids as it goes more in depth of the science and loads of different symptoms that are not addressed in the previous two. I would say 9 would be a good age for this book but my 7 year old has read it on his own and I previously read it to him, but he’s like me and likes all the information possible and asks lots of questions. This book is detailed but also simple enough that your average reader can understand. I am not even sure if this book was aimed at children, but my kids liked it for the details. I plan on using this book when I discuss invisible illnesses with my youngest cub scout den.
  4. MS Children’s Book by Zac Raasch, this book discusses MS as though it’s a monster. (MonSter), I know this is a way that some people address their MS and this would be good for those people. The book is easy to read and goes over the basics in a child friendly way.

All four of these books are good, my children found them helpful. I would say if the child is over 9 or 10 though just go to the third book as the other three may seem to young for them.

Have you found anything to be helpful when discussing this with kids? I am always open to new ideas.